I Should Never Have Wished So Hard

Joe Saxon

When Hugh was nine months old, he stopped breathing for the first time. By the time the ambulance arrived he was breathing again, but they rushed him to hospital and we waited anxiously for the doctors to tell us why it had happened. With little more to go on than a distressed mother’s description of events, they concluded it was ‘one of them things’, and it was unlikely to happen again.

Two weeks later it happened again.

And then again two weeks after that.

By the time Hugh was one year old he stopped breathing frequently, sometimes several times a day, and we’d been trained to perform CPR on him every time it happened.

The reasons he stopped breathing were unclear. Different theories were suggested and discounted, and several EEGs had shown nothing. Finally, shortly after his first birthday an episode was caught on an EEG and it was confirmed that they were in fact seizures, and Hugh was given a diagnosis of epilepsy.

With the diagnosis came a sense of relief. We finally had a reason why Hugh was fighting for his life so often.

The diagnosis also brought information. I scoured the internet, read articles, rang helplines, and reached out to other parents to arm myself with as much information as I could.

With that diagnosis came hope; hope for treatment, hope of a cure, hope for a life that wasn’t dominated by hospitals and ambulances and life or death situations.

But Hugh doesn’t have the kind of epilepsy that can be controlled by drugs. Hugh doesn’t have the kind of epilepsy that you can read about on the internet. Hugh doesn’t have the kind of epilepsy paraded by the big charities - the kind that lets you lead a normal life, drive a car, have a job or start a family. The people on the helplines didn’t want to talk about our kind of epilepsy.

Hugh has ‘complex epilepsy’, ‘medically intractable epilepsy’, ‘life-threatening seizures with prolonged apneoas’. What this essentially means is that Hugh’s epilepsy can’t be controlled by drugs, and that his seizures cause him to stop breathing indefinitely. He won’t start breathing again until the seizure stops.

Epilepsy controls and dominates our lives. Hugh requires round the clock care, 24 hours a day, seven days a week. He needs someone with him trained to resuscitate him at all times. He carries a bag, mask and oxygen with him everywhere he goes, as well as midazolam – the ‘rescue medication’ – a powerful drug used to stop the seizure.

Hugh has tried seven different anti-epileptic drugs to no avail, each with horrible side effects. He’s tried a high-fat, low carbohydrate diet (the ketogenic diet), which thankfully reduced the frequency of the worst seizures. And he’s had surgery to have a vagal nerve stimulator implanted, which sends electrical signals to his brain with the aim of interrupting the erratic brainwaves that cause the seizure. This has also thankfully reduced the severity of the worst seizures.

But Hugh still has seizures most days. He has four or five different types of seizures – ranging from the daily ones, which self-resolve after five minutes or so and don’t bother him, to ones that come in clusters that can last for over 20 minutes and distress and frighten him, to the ones that cause him to stop breathing. We manage many of his seizures at home, but he still ends up in hospital approximately every three months.

We have resuscitated Hugh at the side of the road, in the kitchen of our friend’s house, in the hospital car park, in his bed, on the floor, in his wheelchair and in the back of the car. I’ve done it, my mum has done it, Hugh’s dad has done it, carers, nurses, doctors, and even his own brother has had to give him mouth to mouth.

I will never get used to seeing the colour drain from his face, his lips turning blue and his finger nails black.

I will never get used to ringing for an ambulance, the minutes stretching for an eternity as I strain to hear the tell-tale sound of sirens getting closer.

I will never get used to begging him to breathe, praying for the seizure to stop.

Epilepsy can take my son from me at any time. I live with that fear constantly.

When Hugh stopped breathing for the first time, I wished so hard to know why.

Now I know. I should never have wished so hard.

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